New BRCA tests

New BRCA tests have been developed that are faster and less expensive than the ones done by Myriad Genetics. I think this is great news. Myriad has claimed they patented the BRCA genes but these new tests were developed in Canada so maybe they escaped the long arm of the law.

I had blogged about this before and Myriad was still waiting for a final ruling on their patent. The Supreme Court had thrown it out because they said the laws of nature can't be patented.  This I agree with. Now that a second test has been developed on the genes it reinforces this idea that the genes shouldn't be patented. How could it be that a single company could have power over women needing this test? This is where laws need to catch up with technology.

Stronger cancer drugs

There is a new type of cancer drug being investigated. They are called carboranes:

"Over the past decade, we have seen an increasing interest in using carboranes in drug design," said Mark W. Lee Jr., assistant professor of chemistry in College of Arts and Science. "Carboranes are clusters of three elements — boron, carbon and hydrogen. Carboranes don't fight cancer directly, but they aid in the ability of a drug to bind more tightly to its target, creating a more potent mechanism for destroying the cancer cells.

In the study, Lee and his research team used carboranes to build new drugs designed to shut off a cancer cell's energy production, which is vital for the cell's survival. All cells produce energy through complex, multi-step processes. The key to an effective drug is targeting the process that cancer cells depend on more than healthy cells. By increasing the binding strength of a drug, a smaller dose is required, minimizing side effects and increasing the effectiveness of the therapy. With carboranes, Lee found that the drug is able to bind 10 times more powerfully.
"The reason why these drugs bind stronger to their target is because carboranes exploit a unique and very strong form of hydrogen bonding, the strongest form of interactions for drugs," Lee said."

They have been tested on breast, lung and colon cancer and are very successful. They are also being tested on other forms of cancer. What is significant about their strength is that you can take a smaller dose which will have a stronger effect but will have fewer side effects. I'm all for fewer side effects in life.

Of course more research is needed so it won't be around anytime soon. But I still call this a significant advance.

Every patient is different

Every patient is different. Every patient is different. Every patient is different. Every patient is different. Every patient is different. Every patient is different. Every patient is different. Every patient is different. Every patient is different. Every patient is different. Every patient is different. Every patient is different. Every patient is different.

As you may know from reading my blog that one of the biggest thing that irks me is when someone tells you that their neighbor's cousin's dog walker's sister's friend had the same ailment as you 20 year ago and their treatment protocol was different and they just don't understand why you are getting something different. Its rude. It makes you doubt your own treatment protocol and doctor. And its none of their damn business.

So now this study (because we needed another study) says that 'Individualized Care is Best for Lymphedema Patients'. I didn't go to medical school and I could have told you that.

Living with lymphedema is no fun. I can't wear a watch or bracelet on my left arm - no matter how loose it is. If I do I have to wear a compression sleeve for a week to make my arm feels better. This surprises my doctors. I also have to wear a compression sleeve when I work out or when my arm feels like its acting up - like maybe today I will. I have to do the stupid little lymphedema exercises to help my arm. They are just annoying.

I have a friend who had lymphedema and then lost a lot of weight and it went away. I have another friend who is very thin and has to wear a custom sleeve every day - and has for 17 years. I have a lot of friends who had the same surgery and never got lymphedema. See we are all different. 

When medical standards change and they don't tell the patients

Back when I had thyroid cancer in 1981, I was followed by an endocrinologist for more than a decade. Then my endo retired and I switched to a general internal medicine doctor for a primary care doctor. Some where during that time, standards for follow up to thyroid cancer patients changed. Ultrasounds become the standard for following up on potential residual tissue or recurrence and were ordered by endocrinologist. I just went along my merry way with out an endocrinologist not knowing that I should have one.

In 2008 I went to the Thyroid Cancer Survivor's Conference in Boston and found out that I had clearly missed something and should have an endo. Then I started seeing an endo twice a year for blood work and regular ultrasounds and am back on the program.

I had felt somewhere I should have been told that the standards are changed and endocrinologists follow thyroid cancer patients for life. There is no real way patients have for learning about changing standards in care over time. We assume our doctors will tell us.

My previous primary care never was a good communicator and I have switched from her to a new doctor. She really was a communication failure and I rarely saw her, mostly her nurse practitioner, which is why she is no longer my PCP. If this change happened sometime after the early 1990s she should have told me at some point.

I have now learned to be more proactive about asking about changes in treatment. I think my new primary care also does a better job of telling me about changes in standards so I feel more comfortable about it. And I can always hop on to Dr. Google and see what he tells me so I can ask about them.

I got the d*mn memo

The current advice is to be 'Fit by 40'. Because as you age its harder and harder to lose weight and to stay in shape. As my 40th birthday approached, I told myself that I would take better care of myself when I was in my 40s.

As part of my birthday celebration (which included a planned Caribbean vacation):

• I joined a gym
• I got my first skin cancer checkup
• I joined a dating service after several years of being single (and met my husband)

I actually had a few years of being fit and healthy and then my pesky health issues started and that cancer thing, but now more than a decade later I am a gym junkie where I go three times a week.

So I did get the damn memo on being fit at 40 and take care of my health. Its not my fault everything else happened and put me in my current dilapidated state. But before I start the 'woe is me' mentality, I will say I am proud of myself for some of the things I have accomplished in that time.

• I learned to kayak and snow shoe
• I took up knitting and crocheting and hope to sell some items in a local store this fall
• I greatly increased my medical vocabulary
• I took a weedy neglected garden at the house we bought and now can say it will bloom from February through November (no small feat in southern New England)
• I made lots of new friends both on and off line
• I started a little blog.
• I think I just made lemonade out of life's lemons.

PCIP.gov

Remember that website. It stands for Pre-Existing Condition Insurance Plans. It is a US government plan for those without healthinsurance. Here are the eligibility requirements:

To qualify for PCIP, you must:

• Have a pre-existing condition
• Be a U.S. citizen, or live in the U.S. legally
• Have been without health coverage for the last 6 months

You are NOT eligible for PCIP coverage if:

• You have other insurance coverage, even if it doesn't cover your medical condition
• You're enrolled in a state high risk pool
• You have Medicare, Medicaid, CHIP, VA or TRICARE coverage
• You have job-based coverage, including COBRA, or continuation of coverage, even if it’s about to end
• You have a limited benefit plan

It is available for residents of  Alabama, Arizona, Delaware, District of  Columbia, Florida, Georgia, Hawaii, Idaho, Indiana, Kentucky, Louisiana, Massachusetts, Minnesota, Mississippi, Nebraska, Nevada, North Dakota, South Carolina, Tennessee, Texas, Vermont, Virginia, West Virginia, and Wyoming. 

All other states offer their own PCIP programs and you can find a link to them here.

The reason I am writing this post is because of this woman, Leslie Elder with four cancer diagnoses and no insurance, who died of cancer because she did not know she was eligible for insurance with these new plans. This is so wrong.

The new Affordable Care Act provides insurance to more people but I cannot say by any stretch of imagination that it is a 'simple plan'. Didn't Congress end up with a many thousand page document? Its a lot of information to get out there.

I wish we didn't have to whisper

Yesterday I finally gained some sense and trekked on down to the local pharmacy to inquire about a cold medicine that I can take. Its not as simple as you may think because I have no thyroid, I am allergic to Benadryl and must avoid all anti-histamines, and am on anti inflammatories so I can't have aspirin products. I gave the list of issues to the pharmacist and she gave me a suggestion.She said I could take it even though it warns against thyroid disease because she takes it and she doesn't have a thyroid either.

I unleashed my inner snoop and asked her why she didn't have a thyroid and she whispered 'I had cancer'. I asked her when and she said 4 months ago. I said me too but more than 30 years ago. That seemed to please her.

I can understand why she whispered 'I had cancer' because she didn't know if I would run and flee at the word, give her unwanted advice, or yell it through the store. But I wish we didn't have to whisper and people and their attitudes would change.